Anyone only experienced endo symptoms aft... - Endometriosis UK

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Anyone only experienced endo symptoms after fertility treatment?

Jabster profile image
12 Replies

Just curious as I know there is no rhyme or reason to getting Endo.

I also have PCOS, diagnosed years ago when we were struggling to conceive. Many rounds of Clomid and IVF later still no luck. Within a few months of IVF I started having pains during/after sex. Another consultant at our review brushed it off.

It got worse and periods horrendous so seen the gynae we were with before & during all our fertility treatment and he diagnosed endo from all my symptoms, referred for a lap (still waiting!)

Just wondering if anyone else has only experienced endo after fertility treatment? x

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Jabster
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wp22 profile image
wp22

Do you know it doesn't surprise me that fertility treatment can cause it. Did you have eggs collected as I would say it would more likely to be that because when they collect eggs they go through your womb and pierce through the inside of the womb (where endo comes from) to get to the ovaries so therefore pushing endo cells from inside where they should be to outside where they shouldn't be. Causing endo to begin. But on the other hand if you haven't had eggs collected yes I am not surprised as I think there can be a fine line between not having endo and doing something naively to cause endo and I think it doesn't take much. Sorry you are suffering too. X

Jabster profile image
Jabster in reply towp22

Thank you for the reply

Yeah we had egg collection, an experience I never ever want to repeat!

That makes sense what you are saying. I just find it a coincidence I never had any endo symptoms until after the treatment and literally within a few months of it too.

I have been waiting nearly a year for a lap now! It's delayed again as I've now high BP and they won't operate until it's down/controlled.

No more combined pill which is scaring me with what pain & bleeding is ahead :(

Thanks again x

wp22 profile image
wp22

Meant to say I have had Ivf, got 100% fertilisation! 2ce which I believe is rare and not even a sniff of a positive. Everything went perfectly. This was about 2 yrs after I got endo, otherwise I'm sure it would have worked first time. I didn't know I had endo then but my right ovary was stuck to something when I had my first lap and I think it was because of the egg collection process why it stuck. Yes my egg collection recoveries were as painful as lap recovery which I did not expect as I had never had any surgeries before that. X

Jabster profile image
Jabster in reply towp22

Hugs x

We had 5 eggs (which was a miracle as I wasn't responding to stimming) 3 fertilised and 2 transferred. I honestly believe I had an auto immune reaction. Started bleeding 12dp3dt.

I wasn't too bad after the collection but during it was awful.

We've applied to adopt now but I'm scared if the endo gets worse how would I cope with a child?!

Thanks for replying, it's good to chat to others who understand x

I was diagnosed with Endo and PCOS at the same time in 1991. I had a laparoscopy due to pelvic pain.

At that stage my Endo was minimal and localised to my right ovary. I was put on Danazol for six months.

I was then prescribed Clomid as I was not ovulating due to the PCOS. During treatment with the Clomid I had to have regular scans to check for follicle development. During the five months I was taking the Clomid my endometriosis grew quickly and aggressively.

I had to stop the Clomid and have another laparoscopy to laser the Endo (which was now on my bladder, ovary and in my POD). I also had a large endometrioma.

Clomid and all fertility treatments can be prescribed to ladies with Endo but with caution as it can make the endometriosis grow very quickly!

Good luck.

Barbara

P.S ovarian drilling is a good treatment to help PCOS and the associated infertility

Jabster profile image
Jabster in reply to

Thank you Barbara x

I had the most horrendous periods whilst on Clomid, bed ridden for a day or so! Never had anything like it before. I have since read that it really shouldn't be used in PCOS /endo ladies without strict caution. At the clinic we were in, it was one size fits all and I felt very little personal attention and know from others there they felt the same.

We have stopped TTC, I've had enough of all the treatments tbh and we're hoping to adopt. If not then we have furbabies to keep us busy :)

Thanks for replying x

in reply toJabster

Best wishes for the adoption !

What type of fur babies do you have? I have dogs. Unfortunately my elsedst dog (Harvey) passed away yesterday.

X

Jabster profile image
Jabster in reply to

Awh noes :((( huge hugs! x

We have 2 little miniature schnauzers, they certainly keep us busy!

Thank you, waiting to start our assessment but for once I'm not getting too stressed or hopes built up x

wp22 profile image
wp22

Hey you should try femara for ttc.... It's an aramatase inhibitor. Works the same as chlomid, you take it for 5 days but doesn't make endo grow. Infact it can stop endo from growing but you have to take it longer term to do that with supplements for bone aches. The only difference is that there will be fewer eggs ripened with femara. Named letrozole, look it up, I have used it both to ttc and for 5 months to help with endo. I loved it. It was my wonder drug. X

Jabster profile image
Jabster in reply towp22

I'll check that out, thank you :) x

Hel34 profile image
Hel34

Hi there,

Looking back I think some of the pain and oddities with periods over the last ten years were probably undisguised endo. But post-Clomid and IVF it was like a different world, a debilitating and terribly painful one.

This is an interesting question, and one I've had myself, so it's good to not feel alone. The Clomid made me feel terrible and now, two years on from IVF and one year on from my second lap I'm having a multi organ op with parts of the bowel and kidney being removed.

It's good to know there are others out there xx

Jabster profile image
Jabster in reply toHel34

Yes! That's exactly it!

I know at the time we had to try the Clomid & IVF and don't regret, I just wish they have you more information to make an informed decision rather than just telling you take this/do this etc

Massive hugs all round x

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